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Sorry, but Australia is going to have to be Geoblocked 6 years 6 months ago #16881

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tga.gov.au also case a 'contact the TGA' link, just saying
Genotype 1a
Diagnosed in 2004, had HCV for all my adult life. Until 2016!!!!
Harvoni treatment, started 19 March 2016
4 week results Bilirubin 12 down from 14 pre treatment,
Gamma 25 down from 52, ALT 19 down from 63, AST 19 down from 47,
VL <15 down from a lazy 6 million or so

EOT Results
Bilirubin 10, GGT 18, ALT 19, AST 21, VL UND

12 Weeks post EOT
Bilirubin 11, GGT 16, ALT 22, AST 20, VL UND
Cured baby
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Sorry, but Australia is going to have to be Geoblocked 6 years 6 months ago #16890

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:angry: :angry: :angry: :angry:
Just had a look at
www.tga.gov.au/decisions-relation-compla...rtisements#summary-f

What this site is doing is SO FAR REMOVED from the other cases.

It's ridiculous.
Genotype 1a
Diagnosed in 2004, had HCV for all my adult life. Until 2016!!!!
Harvoni treatment, started 19 March 2016
4 week results Bilirubin 12 down from 14 pre treatment,
Gamma 25 down from 52, ALT 19 down from 63, AST 19 down from 47,
VL <15 down from a lazy 6 million or so

EOT Results
Bilirubin 10, GGT 18, ALT 19, AST 21, VL UND

12 Weeks post EOT
Bilirubin 11, GGT 16, ALT 22, AST 20, VL UND
Cured baby
The following user(s) said Thank You: Meg, GT2

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Sorry, but Australia is going to have to be Geoblocked 6 years 6 months ago #16891

beaches wrote: I don't often write to politicians but I think I will over this. I'm guessing that the TGA is part of the Health Minister's portfolio?



Try:

www.health.gov.au/internet/ministers/pub...ussan-ley-mp-contact


or:

sussanley.com/contact/


The second is a fill in the boxes style of thingo.

One thing I found out along the way with Hep C when it could not be cured, us that everyone wanted to take something away from you...

Enough is now enough.

Yours


J.
GT3a 1990 Failed Inter 1998, comb in 2000. HCC 2012
Started 24/52 Sof/Dac 27th October 2015.
1. Bloods 2 October 2015: AST - 165 (20-40), ALT - 265 (5-40), GGT 189 (5-50)
2, Bloods 20 November 2015: ALT etc normal; VL 19
3. Bloods 8 January 2016: AST - 40, ALT - 59, GGT 48 VL RNA UND
4. EOT 12 April 2016 - blood tests: all is well, CT scan: okay
5. AFP 11 June 2016: 4 ref< 11
6. VL July 2016: DET
7. Oct16 start treat - June17 UND
8. Jun 18, lfts okay, platelets a bit low.
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Last edit: by sabrecat.

Sorry, but Australia is going to have to be Geoblocked 6 years 6 months ago #16898

I found this statement on the Home page of this site:

Cure Hepatitis C with Sofosbuvir Ledipasvir Daclatasvir
Important information for Australian Hep C sufferers
On March 1st 2016, the Hep C medication became available on the Pharmaceutical Benefits Scheme (PBS).  The medications available are:
• sofosbuvir + ledipasvir (Harvoni®)
• sofosbuvir (Sovaldi®)
• daclatasvir (Daklinza®)
• ribavirin (Ibavyr®)


Can I complain to the TGA about the flagrant advertising of pharmaceuticals called Harvoni etc? I believe they are registered names belonging to an American company. This is really important and needs looking into methinks.

BUT seriously, I did notice on another thread Dr James saying the main issue with Hep C, IS NOT SVR, but people actually deciding to use the medications! My G.P. told me he has ONE person on the PBS for these meds. ONE! And I don't live in the bush.

Here we have a web site in Australia doing more for Gilead's (now subsidised by the PBS) profits than anything they could ever hope to do - telling people to get treated with medications that Gilead sell here in Australia.

I thought they had some clout with all their money? If I was a Gilead shareholder I would be fuming with the TGA.

Go figure and tell me you don't get a headache in doing so. I at least thought your average sociopath was intelligent.


J.
GT3a 1990 Failed Inter 1998, comb in 2000. HCC 2012
Started 24/52 Sof/Dac 27th October 2015.
1. Bloods 2 October 2015: AST - 165 (20-40), ALT - 265 (5-40), GGT 189 (5-50)
2, Bloods 20 November 2015: ALT etc normal; VL 19
3. Bloods 8 January 2016: AST - 40, ALT - 59, GGT 48 VL RNA UND
4. EOT 12 April 2016 - blood tests: all is well, CT scan: okay
5. AFP 11 June 2016: 4 ref< 11
6. VL July 2016: DET
7. Oct16 start treat - June17 UND
8. Jun 18, lfts okay, platelets a bit low.
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Sorry, but Australia is going to have to be Geoblocked 6 years 6 months ago #16907

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I've looked at some of the complaints the TGA has acted on recently.
The actions against Individuals and organisations have been for false advertising (e.g. chewing gum that is claimed to make you lose weight, pain relief medication (Nurofen) with bullshit claims).
All the information on this site is correct and backed up by evidence.
Why the frock is this happening? (silly question, we all know the answer)
Genotype 1a
Diagnosed in 2004, had HCV for all my adult life. Until 2016!!!!
Harvoni treatment, started 19 March 2016
4 week results Bilirubin 12 down from 14 pre treatment,
Gamma 25 down from 52, ALT 19 down from 63, AST 19 down from 47,
VL <15 down from a lazy 6 million or so

EOT Results
Bilirubin 10, GGT 18, ALT 19, AST 21, VL UND

12 Weeks post EOT
Bilirubin 11, GGT 16, ALT 22, AST 20, VL UND
Cured baby
The following user(s) said Thank You: Matt-Kenney-google, Meg, GT2, fitz

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Sorry, but Australia is going to have to be Geoblocked 6 years 6 months ago #16910

All the information on this site is correct and backed up by evidence.
Why the frock is this happening? (silly question, we all know the answer)


Maybe it was the virus that complained?


J.

and where's that rant bannana thing.
GT3a 1990 Failed Inter 1998, comb in 2000. HCC 2012
Started 24/52 Sof/Dac 27th October 2015.
1. Bloods 2 October 2015: AST - 165 (20-40), ALT - 265 (5-40), GGT 189 (5-50)
2, Bloods 20 November 2015: ALT etc normal; VL 19
3. Bloods 8 January 2016: AST - 40, ALT - 59, GGT 48 VL RNA UND
4. EOT 12 April 2016 - blood tests: all is well, CT scan: okay
5. AFP 11 June 2016: 4 ref< 11
6. VL July 2016: DET
7. Oct16 start treat - June17 UND
8. Jun 18, lfts okay, platelets a bit low.
The following user(s) said Thank You: Matt-Kenney-google, Meg, GT2

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Last edit: by sabrecat.

Sorry, but Australia is going to have to be Geoblocked 6 years 6 months ago #16921

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#rant = #rant


Enjoy :+1:
G3a since '78 - Dx '12 - F4 (2xHCC)
24wk Tx - PEG/Riba/Dac 2013 relapsed
24wk Tx - Generic Sof/Dac/Riba 2015/16 relapsed
16wk Tx - 12/01/17 -> 03/05/17 NS3/NS5a + Generic Sof
SVR7 - 22/06/17 UND
SRV12 - 27/07/17 UND
SVR24 - 26/10/17 UND
:cheer: :cheer: :cheer:
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Sorry, but Australia is going to have to be Geoblocked 6 years 6 months ago #16981

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I've been looking at the TGA Act, and it seems they are just gunning for Doctor James, interpreting the Act to suit themselves.

I get that fighting it would be costly in many ways and much more than likely unsuccessful, but gee this sucks.

Australia is fast becoming a police state. My father was a survivor of WWII and a refugee. He came to Australia because we didn't have any of that shit, well it seemed a better option than the US with McCarthyism and all. I'm glad he s no longer here to see what is happening to the country he made such a contribution to. Shame.
Genotype 1a
Diagnosed in 2004, had HCV for all my adult life. Until 2016!!!!
Harvoni treatment, started 19 March 2016
4 week results Bilirubin 12 down from 14 pre treatment,
Gamma 25 down from 52, ALT 19 down from 63, AST 19 down from 47,
VL <15 down from a lazy 6 million or so

EOT Results
Bilirubin 10, GGT 18, ALT 19, AST 21, VL UND

12 Weeks post EOT
Bilirubin 11, GGT 16, ALT 22, AST 20, VL UND
Cured baby
The following user(s) said Thank You: mgalbrai, Lynne-Francis-facebook, Matt-Kenney-google, Meg, GT2, fitz

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Sorry, but Australia is going to have to be Geoblocked 6 years 6 months ago #16991

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Hi all ! how depressing !! The Killing of a web site for people looking out for each other. Helping, caring and sharing their time, knowledge and incredible support for each other. This club verges on unconditional love. And this insult to Dr JF takes my breath away. Its about time some Media got hold of this story with the TGA and shook it by its THROAT It needs respectful coverage by 7.30 report or similar. To expose the whole story and the incredible people behind the story. I myself would like to thank all forum members for their help and beautiful attitudes during our journeys together, sadly that is soon to end. Very sad. Lets not let them forget..... it supposed to be about CURING people of a horrible illness many have suffered for decades
. Yours sincerely Poodle xx
Geno1a 35years fibrosis 2 or 3 different results from different hospitals ??
24weeks mesochem sof/led as unsure of fibrosis status.
currently UND. No bad side effects
Have svr12 ... waiting for svr 24
I now have SVR 36 weeks.
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Sorry, but Australia is going to have to be Geoblocked 6 years 6 months ago #17014

Seems appropriate... "something IS really wrong here ...
GT1a; Got it some time in the 70's; Diagnosed @1976
Tx naive
METAVIR: A2-F2
SOT May 18, 2016: CMP: AST 162 ALT 241 VL 13000000
3 weeks after SOT: AST 27 ALT 31 VL 138
Reached EOT Aug. 10, 2016 / Received svr4 results Sept. 20, 2016: AST 22 ALT 24
Hep C RNA "NOT DETECTED"
AS OF 3/20/2017 ,Hep C RNA PCR "NOT DETECTED" THAT'S SVR24!
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Last edit: by Matt-Kenney-google.

Sorry, but Australia is going to have to be Geoblocked 6 years 6 months ago #17029

Ahhhhh...
Leave the country and a week later, the shit has hit the fan. I climbed a ridge to get cell service in Mihai Vitazeau and look what I find: The TGA is using Kim Jong Un for a role model. A first world democracy engaged in blantant censorship of nonseditious or noninflammatory speech is simply unacceptable. FHC is saving lives, not listing meth recipies or IED plans.
So now we know the pound of flesh demanded by Gilead for "making the deal".
If Dr. James can Fix Hep C, we ought to be able to fix this. I don't want to lose touch with my brumby buddies...
Where there's a will...
Time to catch up on my thank yous and post readings....
m
This email address is being protected from spambots. You need JavaScript enabled to view it.
forums.delphiforums.com/generichcvtx

G 1a F-1
Started tx 10/23/15 (Meso sof & led) ALT 48 AST 28 v/l 1.6 mil
11/17/15 4 wk lab ALT 17 AST 16 <15
11/18/15 Started Harvoni
12/16/15 8 wk lab ALT: 15 AST: 13 V/l UND
1/14/16 Fin. Tx
7/07/16 UND SVR 24
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Sorry, but Australia is going to have to be Geoblocked 6 years 6 months ago #17037

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I just had what might be a good idea and thought I should get it down before hitting the hay.
There was an article about Dr James and the generics (sounds like a good band name, but I digress) in the Sydney Morning Herald last April, by the same journalist who covered Fixhepc last year.
I wonder if he'd be interested in covering this latest turn of events.
His name is Richard Woolveridge. Tomorrow I'm going to try to contact him. smh might have a bit more ipact than a few hundred people writing letters to politicians.
Need to think of the best ways to leverage the coming election and this might be one of them
Genotype 1a
Diagnosed in 2004, had HCV for all my adult life. Until 2016!!!!
Harvoni treatment, started 19 March 2016
4 week results Bilirubin 12 down from 14 pre treatment,
Gamma 25 down from 52, ALT 19 down from 63, AST 19 down from 47,
VL <15 down from a lazy 6 million or so

EOT Results
Bilirubin 10, GGT 18, ALT 19, AST 21, VL UND

12 Weeks post EOT
Bilirubin 11, GGT 16, ALT 22, AST 20, VL UND
Cured baby
The following user(s) said Thank You: coral, poodle, mgalbrai, Debs, Fara, Matt-Kenney-google, Meg, fitz

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Last edit: by beaches. Reason: typo

Sorry, but Australia is going to have to be Geoblocked 6 years 6 months ago #17038

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Richard Woolveridge is on Twitter btw
Genotype 1a
Diagnosed in 2004, had HCV for all my adult life. Until 2016!!!!
Harvoni treatment, started 19 March 2016
4 week results Bilirubin 12 down from 14 pre treatment,
Gamma 25 down from 52, ALT 19 down from 63, AST 19 down from 47,
VL <15 down from a lazy 6 million or so

EOT Results
Bilirubin 10, GGT 18, ALT 19, AST 21, VL UND

12 Weeks post EOT
Bilirubin 11, GGT 16, ALT 22, AST 20, VL UND
Cured baby
The following user(s) said Thank You: poodle, Matt-Kenney-google, Meg, fitz

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Sorry, but Australia is going to have to be Geoblocked 6 years 6 months ago #17107

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Yes Beaches this is the kind of thinking needed to fight back. The more people who are aware of TGA behavior the more opinions will be voiced. Its simple and obvious TGA are looking for a problem which dosent exist ..?whilst Fixhepc club works perfectly well to help with the solutions, the irony is sad, and stupid. I did know a few people in media but that was many years ago, unfortunately I have lost contact with those connections. We need someone who knows someone. ... Best Wishes Jill
Geno1a 35years fibrosis 2 or 3 different results from different hospitals ??
24weeks mesochem sof/led as unsure of fibrosis status.
currently UND. No bad side effects
Have svr12 ... waiting for svr 24
I now have SVR 36 weeks.
The following user(s) said Thank You: Meg, fitz

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Sorry, but Australia is going to have to be Geoblocked 6 years 6 months ago #17117

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beaches wrote: Richard Woolveridge is on Twitter btw


I'm not a big twitter user and am not really sure how it works, but I found Richard Woolveridge's last post about fixhepc. It referred to his smh article.
I replied to that post. It seems it's going to him and smh (although I don't know if that means they will receive it) saying I wish they would report on the TGA witch hunt of the fixhepc site. Shot in the dark.
Genotype 1a
Diagnosed in 2004, had HCV for all my adult life. Until 2016!!!!
Harvoni treatment, started 19 March 2016
4 week results Bilirubin 12 down from 14 pre treatment,
Gamma 25 down from 52, ALT 19 down from 63, AST 19 down from 47,
VL <15 down from a lazy 6 million or so

EOT Results
Bilirubin 10, GGT 18, ALT 19, AST 21, VL UND

12 Weeks post EOT
Bilirubin 11, GGT 16, ALT 22, AST 20, VL UND
Cured baby
The following user(s) said Thank You: Meg, fitz

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